When people stare, I try to raise awareness and break down that stigma.

Amy is a person before she is a person with a disability.

When I look at her, I see my beautiful amazing daughter. I don’t see splints, a feeding tube, a wheelchair, and all of those other things that to others make her “different”.

I want them to see her how I see her.

Recently I attended a trip with our lovely home start volunteer Carole and all of the other local families helped by this wonderful charity.  Admittedly this is one of the harder days out we have had.

We went to a farm. Amy was mainly a little bit grumpy and needed constant Disney tunes playing in order to even try and interact with the world around her.

We were in the gift shop buying ice cream (not for Amy!) when I noticed 3 children were staring at me.

When children stare I don’t mind as much. Children stare… it’s what they do, especially if what they see is not the “norm” for them. But what I DO mind, is when parents do the wrong thing.

“STOP. STARING” shouted the mother. To which the children didn’t respond and unabashedly continued to stare.

“I SAID STOP. STARING” she said again, growing more embarrassed and angry.

What I would have preferred is “oh have you seen a nice little girl? Why don’t you go and say hi and tell her your names?” I don’t live in a dream world I know… but this has happened a good few times.

Once a lady brought her child over and said “look at this lovely little girl! Doesn’t she have a cool wheelchair… can you say hi to her?” I was gobsmacked. It made my day.

That first mum could have turned this encounter into an educational experience, a proper life lesson in inclusion and differences.

But instead she decided to feed the stigma and contribute to the sort of people who are taught to fear disability and disregard anyone who is different.

It is really disheartening, especially when now I feel we are in an age where acceptance and inclusion is on the increase.

I know that people sometimes do feel awkward and not know what to say, but if you have children who can speak you need to prepare for any sort of questioning of differences.

Those children may even have thought Amy could be a great potential friend – children don’t judge as much as adults. They are very accepting.

As you can see, I have thought a lot about this micro encounter. I bet that mum doesn’t even remember the incident or the impact it could have had on us.

I wish now I had gone over and introduced Amy to them. I’m not shy these days but was on that day.

I know I’ve said it it before but it’s very important to me…

A wheelchair does NOT represent confinement. She is not, “wheelchair bound”.

I try not to get too caught up on the words but this one frustrates me. Her wheelchair is her FREEDOM. The problem is not everywhere is accessible.

The more people who advocate for wheelchair users the more change we will hopefully start to see.

Once when I was a child I used to see a man using a power chair. He lived local to me and he had a sign on the back of his chair that said “disabled not dead”.

A bold statement, but I always thought “good on him”. It reminds me of, “the only disability is a bad attitude”, which I know is cliché, but I do like that.

I’ve got it logged in my mind in the category that also holds “inchstones not milestones” and “fed is best”.

Next – The feeding tube. No dear stranger, it is not oxygen! You’ll be surprised how much I am asked that. I’m glad it isn’t… imagine what that would do for her already bad gas issues!

The feeding tube… yes it does annoy me… the pump more specifically.

You could argue she is “tethered” to it 24 hours a day… but actually this amazing piece of medical technology enables her to do what? LIVE! It enables her to live. Without it, sadly she could not exist.

We are very thankful for the tube. Yes, she probably will always have it. No, it does not hurt her. Yes, I do manage it myself and no, I never imagined I would ever be doing it.

Like you… I deal with the cards I am dealt and so is she.

The splints? No, in our case they are not to help her walk. They are AFOs (ankle-foot orthotics)… The reason I hate them is because they make buying shoes difficult.

Also in summer they are a bit gross to wear sometimes. She doesn’t hate them, they help keep her feet and legs in a good position, and if you’re not paying attention she’s really good at kicking you in the head with them.

This isn’t a threat… a polite warning from someone who has learned the hard way too many times.

You get the point.

Our days are filled with many positive interactions and my favourite ones are the ones where people can overlook the risk of “looking silly” when she doesn’t talk back, or turns away and ignores them.

The people who celebrate the coolness of the pattern on her splints or marvel at her awesome smile. I love the people who see her, especially when she’s happy… and I can see her happiness rub off on them.

I don’t like the whole being “inspired” by people with disabilities, but I can also see how they feel empowered seeing how she rocks life so well most of the time.

She knows no different from how she is, and whilst I know she deals with many pains, frustrations and challenges, I know that also she knows how loved and lucky she is.

One day, the world will see her through my eyes, even if it’s only one encounter at a time.

I am the step-mother to a wonderful and bright young boy named Aaden. Hitting the team year mark, I have known him for five full years of ups and downs.

Now when I say being a step-parent is one of the hardest things I struggle with, please understand that it is not the part of loving this human being.

In the beginning we took baby steps, getting to know each other, the good and bad. But eventually it transformed into loving one another like he was my own biological child.

I hug on him just the same as my other two children (maybe a little less at times to save him the embarrassment), and I even gripe at him the same at my other two.

There is no indifference in this household and it has never felt awkward for either one of us. The issue I face with being a step-parent is wishing there was more for me in the eye of the law.

Now nowhere in my future do I ever see Aaron and I splitting up, but I am constantly haunted by the thought and realization that if it did ever happen, I would have no right to see Aaden after the split.

We have formed a family together, blessing him and each other with two adoring, younger brothers.

But having absolutely no right to anything beyond being married to Aaron and him living in our household full time, we could go from everything to nothing. It is so scary!

I am so blessed to have Aaron, who goes to work each day, full time and even over time, which allows me to work from home and be with the kiddos majority of our twenty four hour days.

That’s over 8000 hours a year with one another, living, learning, loving and fighting. Over 8000 hours of memories we form together as a family.

With all acknowledgment and understanding of privacy and why it is in place, I can’t even call places like the school or doctors without having prior permission given by Aaron for the release of information and such.

We are sometimes the ones who spend the most time with our step-children, yet we are the most restricted.

I can only love this little boy like my own with no limitations or boundaries, and hope that I make the best difference in his life and choices.

I, Dear Reader, was one of these children.

Studying for my degree a little later how I cursed this educational approach. Introduced to linguistics, nouns and adverbs had been mythical creatures to me, the like of which I’d never encountered.

I longed for my privately educated friends awareness of the present participle as I feebly attempted to understand sentence structure.

Well now it’s back, and what madness is this? Children under eleven are going to be expected to understand fronted adverbials and split diagraphs (no me either and I apparently have some linguistic ability).

Surely unless you are studying language at least undergraduate degree level, these terms are little more than a waste of ink. If you are under eleven, what possible use could thy be to you?

I have three children.

For experimental purposes (I jest) I sent one to Mainstream, one to Special School and put one into mainstream before removing him to home for a year and then popping him into Special Ed, just to compare.

Special school education can bring many conflicting emotions to a newbie parent of an additional needs child.

Sadness, a sense of failure, concern about stigma and general fear of the unknown.

In this litigious society parents have to fill in a lot of forms.

Can he wear a plaster?

Can we apply sunscreen?

Can she be photographed for the school website?

When Pearl started Special School my favourite form came home.

Can she stroke, groom and feed the school donkeys?

This distilled is the difference between Special Ed and mainstream.

The essence of Special Ed is a diversified curriculum.

You take the child as the centre of the process and fit all the things they need to learn around them in a way that is compatible with their learning style and strengths.

Pearl is very good at Science it runs in the family.

Her Dad is a Software Engineer, and my degree is Science based.

Big sister (aka The Glory) is heading for University to study Biology.

Has Pearl passed tests that show she is a scientist?

Has she completed worksheets?

Is she preparing for her Year 6 SATS?

Well no. She loves gardening, caring for animals, examining plants and flowers.

She likes to plant, learn how seeds propagate and experience textures and structures of species.

Her interaction with the natural world in this way piques her curiosity and encourages interaction with others through her PODD communication book (Linguistics and Language).

It teaches her about texture, form and colour (Design).

She learns about nurturing growth and caring.

It opens the door to teaching English, Chemistry, Maths and Physics.

It has value.

Not measurable, box ticking, league table value it’s true, but value none the less.

I watch the Mainstream sub group of my experimental cohort, I mean family, fear she is stupid, as she has not received one A * at A level, as she struggles with feelings of low self-esteem and depression I wonder if mainstream education is all it’s cracked up to be.

We seem to be valuing academic achievement over mental health, and creating a well-rounded person. CAMHS (children and adolescent mental health services) are overwhelmed with referrals.

I would like all schools to be Special.

To allow children to benefit from a diversified curriculum, would allow teachers to teach creatively and loosen the ties on the reliance on league tables.

Maybe it’s time to work out what we really value as a society, an ability to recognize a split infinitive, or a creative, emotionally resilient learner who enjoys knowledge for its own sake, and can apply that learning in real world situations.

In September, everything seems possible, and so you find me in a state of flux, considering finances, housing, accessibility and long and short-term planning.

This, unfortunately, has led to a good hard look at the finances.

I am a child of the “70s brought up in a very frugal household. Credit was frowned on, saving and second hand the order of the day.

My lovely man, however, was never taught the joys of delayed gratification and is under the impression that not owning every single power in existence, is a sign of searing poverty.

We have managed to jog along with these vastly different spending styles for over twenty years of marriage.

Imagine my surprise, dear reader, when I started looking at our accounts.

One amongst us apparently spends a great deal on clothing, hair, beauty treatments and handbags.

When I was growing up, my parents had very little. Coming from an Anglo-Indian background, with servants, my dad seemed extraordinarily frugal.

It was only later I found out that gambling debts run up by my Grandad had led to several moonlight flits from properties.

Dad decided such things wouldn’t happen on his watch, and kept a tight rein on the already meagre finances. Mum was brought up in a council house, with war as the background. She had three siblings and a dad who worked on the railways. Living on a budget was a way of life.

How then have I, a product of this union, moved from being a frugal saver to someone for whom appearance is important enough to splurge on?

During the summer, we spent a lot of time in Wales. On a packed Llandudno beach I found myself with a small Pearl in leg plasters. For ten minutes, we attracted some glances on the beach.

Pearl was rolling around on the sand shrieking with happiness. wearing two bright orange casts so it was understandable, possibly even forgivable.

Suddenly, for no apparent reason, the mood changed. Shrieks of joy changed to screams of pain? Anger? Frustration? I was not at all sure. Pearl had entered full meltdown mode.

As I am a fabulous SEN parent I had left her PODD communication book at home in Cheshire (I know) so had only yes/no questions to to work out what was up.

It is quite difficult to indicate yes/no when you are screaming at full lung capacity with tears streaming down your face (Pearl not me, but it was becoming a close thing).

The wheelchair was out of reach, the child was inconsolable, and small dog Herb, attached to the wheelchair started crying too.

Having tried everything, I stood up and picked up a reluctant, loud, and heavy ten- year- old. Carrying her across the beach.

I am not exaggerating to say that every person on the sand was watching us. And on the prom. And the pier. It was as though the whole of North Wales froze, hushed and turned to follow our progress.

Five minutes later, walking with child in chair and dog in tow I felt my emotions re-engage.

In order to deal with the day to day small traumas in our house calmly, I switch off a big chunk of Jane.

If I don’t, I would go up and down with every emotion riddled situation that batters our family daily, I would need more than coffee and antidepressants to get by, and the family would lose out.

I have learnt to flick off the emotion switch temporarily, in extremis.

This works, but risks me feeling like an identity less husk.

In order to reassert myself I spend money on how I look to tell the world “This is me! I am not just a Carer, I am me, a person! I care about how I look, what I wear! Me! Myself! I!”

I suspect that being Mother of Pearl has made me more self-obsessed because of having to be largely selfless.

Oh, and if you think this is a long, complicated justification of my overspending to Mr. Power Tool…I couldn’t possibly comment.

We recently had our referral come through to attend a sleep clinic with Amy.

Did you know that 20% of those diagnosed with cerebral palsy have some form of sleep disorder? Or 1 in 5 to phrase it differently.

I am not sure Amy has an actual sleep disorder, or if what we are seeing is purely behavioural. Her sleep pattern appears completely random.

She can go to bed any time between 5pm and 9pm… she can sleep through no problem… or she can be wide awake almost all night.

There seems to be no correlation between what she has done that day and how she sleeps, or what time she gets up based on when she went to sleep. She has me baffled.

She already has medication to help her get to sleep, in addition to the other medicines she takes to relax her muscles and ease her dystonia symptoms.

It’s something I have seen so many of my friends with additional needs children go through and it can be truly debilitating and demoralising.

Last night I sobbed.

I got her into bed at a sensible time, we had a well-structured busy week all week and I have been going to a huge effort to ensure the hour before bed time is screen free. (Which is easier said than done with Amy who seeks constant high level sensory input).

I got into her bed with her and sang all of her favourite songs. Instead of bouncing up the bed on her bum and screaming… she lay there. She was looking right into my eyes.

There it was. My reward for hard work. The reason I do this every day and don’t give up. I felt a real warmth in my heart and a matching connection.

It was what I know a lot of parents get with their child but for me I have to stash these snippets of loveliness away in my memory and hope to mask the often aggressive outbursts I am subject to.

Then suddenly, WHAM. Out of nowhere it was like someone had flicked a switch in her brain.

She reached out and swiped my face with such momentum that my reflexes made me get to my feet instantly. I held my nose and checked for blood and could feel that I had received a wolverine-esque scratch vertically down my face. Moment ruined.

She had reduced me to tears. Again. The shock of the hit and taking away of my precious moment had my chin wobbling and the tears flowing.

I feel kind of silly writing this as to some I may seem oversensitive. But it has been this way day in day out recently and I can’t believe the fat lips, black eyes and so on I have had.

I have had therapists in the past jokingly warn me to be careful because if this carries on I will end up with no teeth. It’s one of those jokes that hold a truth. I like having teeth.

The lady from the sleep clinic had asked me if I thought it was accidental and perhaps her involuntary movements caused by her cerebral palsy were accountable.

To which I replied saying no… she has too much of a good aim! Her respite team too have felt the wrath of bedtime Amy.

We joke about it and also feel grateful that she has that feistiness about her. But for me it is a case of I laugh or I cry. Sometimes I do both.

I am nervous to start the sleep clinic course and have noticed already a few things I do that I shouldn’t.

I know I will need to swallow my pride – I know a lot of parents do whatever they can “for an easy life” such as co-sleeping, keeping their child up late and so on.

I worry that tackling this behaviourally may not work – it may be a neurological issue? The sleep clinic team so far have been absolutely incredible.

I was worried I may be judged or be patronised…. they are so understanding and empathetic of our situation. They carry a wealth of experience and information that I can’t wait to apply to us.

Knowing they are there to support me and are aware of our struggles is half the battle… it is clear Amy’s’ dad and I can’t do this alone right now.

There are so many reasons why a childlike Amy may struggle with sleep. It could be a communication issue – something is wrong but she can’t tell me what.

It may be her muscles – I hear muscle spasms are very painful, and she has a lot of trouble silencing them to allow her to sleep. It could be a gastro issue – she is 24 hour GJ tube fed.

Could it just be that ALL 3.5 year olds are naughty when it comes to bedtime sometimes? This feels next level.

It could be positional – what if she slept too long in one position and now her neck hurts? We’ve all done that. I could go on and on speculating what causes her such distress.

I am not sure there is anything worse than either lack of sleep, or not being able to make your child happy.

Once she does go to sleep I am usually too tired to indulge in any hobbies (what even are hobbies these days, other than sleep!) and I go to bed. Once I get in bed I am wide awake.

My own sleep issues start to set in. I think of my many flaws and how I might be failing her. How can I be a better mum? Am I doing it all wrong? What if she hates me?

Of course she doesn’t hate me… don’t think that way. And so on.

The next day I start a pity party for myself, barely able to peel myself out of bed.

Copious volumes of coffee are ingested, YouTube goes on, and I wait to come to terms with the fact that in 12 hours’ time… we will start the whole routine again.

I am secretly hoping the nights getting darker earlier will help the transition too… however the purchase of blackout curtains seems to have gone unnoticed!

I’d love to hear any tips anyone has for sleep? I heard some parents have even tube fed chamomile or valerian tea to their child with some success.

I have tried sleep systems, nature sounds, swaddling, relaxation music, baths, sensory lights/bubble tubes, just anything and everything really.

Also tips for eye bag coverage would be gratefully received! Happy sleeping everyone.

I would also like to thank Amy’s dad/my other half Phil. He is actually the best one at night in our house.

I know a lot of dads seem to get a bad reputation for this but he is the first one up usually to go and check all is okay. Thank you.